News Flash: God Answers Prayer! (Reposted from CaringBridge.com
Within a half an hour of the request going out for prayer last night,
Daniel's rapidly rising temperature plateaued and started back down. By
midnight it was down under 100 and this morning it was back to normal
(probably much earlier, but this was the first we heard). Thank you all
for your prayers last night (and all along).
I was marveling marveling last night at how the technology of modern
"social networking" such as this site, Facebook and others, have made it
possible, not just to send out prayer requests, but to get nearly
immediate feedback from people around the world that are lifting up our
requests for Daniel. How wonderful for the 3 of us, late on a Sunday
night, sitting in a hospital room trying not to worry about a rising
temperature and starting to think through the logistics of an even
longer hospital stay - to get replies from no less than 8 people in the
first 15 minutes or so that they were standing with us in prayer over
the situation. Unless you've experienced that , you might not
appreciate just how much that means or how much we've come to depend on
those little "likes", comments, Guest Book Entries, text and email
messages, etc. Each one is a comfort and encouragement to us in those
darker times when we find ourselves reaching out to the Lord and the Body again ... and again, and again. Thank you all.
At the same time though, it's important for us, to keep the focus in the
right place. I found myself initially titling this entry as "Prayer
Works" - but a little flag rose up in the back of my mind about an old
pet peeve of mine - that people attribute power directly to prayer
itself. Prayer has no power of it's own. Prayer doesn't "work" or
accomplish anything. It drives me nuts to hear of "scientific studies"
regarding the efficacy of prayer, etc. Prayer isn't (or at least
shouldn't be thought of as) anything more than a name given to a
conversation with God. If I were phoning the fire department to come
put out a fire at my house, I wouldn't be extolling the "power of
telephones" to put out the fire would I? I wouldn't think of performing
a scientific experiment to see how many fires were put out for people
who used their telephones (regardless of who they called) versus those
who didn't. The focus is that you used a telephone - it's WHO YOU
CALLED - whether it's a 911 call
or prayer to the Creator of the Universe!
People write books and have arguments about how to "pray effectively"
and such, but as far as I'm concerned, that's all nonsense. Have you
ever
listened to recordings of 911 calls? It's sometimes amazing that the
dispatcher can understand any of it - people are yelling and crying and
babbling ... just trying to get HELP. Yet there are no books (to my
knowledge) written about how to make effective 911 calls. The point
letting the person on the other end know you need HELP!
Thankfully, we have Someone on the other end of the prayer hotline Who
already knows what we need and is eager to grant us what we come to Him
for when we come to Him through Jesus Christ.
So with enormous
gratitude to all our family, friends, and other prayer
partners for Daniel for praying alongside us and "letting our requests
be made known", I want to be sure to keep the primary focus on the
One who ANSWERS those prayers for us and brings us safely through all
the "Floods", "Fiery Furnaces", and trials that come our way.
Thank You Lord Jesus!!! Thank you for answering every prayer we've ever
sent you - regardless of what that answer was, it was exactly what we
needed and when we needed it. Thank You.
- Tim -
Monday, April 30, 2012
Sunday, April 29, 2012
A Potential Setback
We've had a bit of a setback tonight after having done so well today;
Daniel is running a fever now with a headache. Over the past hour, it's
risen from about 99 to 100.8. Not sure what this is about, but if
there's a possibility of infection, we won't be going home tomorrow
(which everything was the way things were looking until this evening.)
He's resting now having stopped "Cowboys and Aliens" half-way through
(so you know he's not feeling well!) Very frustrating.
If it rises above 101.3, they will automatically culture his blood and start antibiotics - which means we'll be here for a minimum of another 48hrs even if the fever goes away (to be sure nothing shows up on the blood cultures).
We may have gotten over-confident since his blood counts were so high on Friday (well into the "normal range" and they said this particular chemo drug shouldn't negatively affect them). So we've been more liberal with visitors this visit. But of course there's no way to know what, or even IF he's gotten anything at this point. There are few better places to pick up an infection than a hospital anyway,
Please pray with us that any infection (or possible drug reaction) would quickly die without the need for more antibiotics or any longer than needed stay in the hospital. Please pray for Andrea and I as well if we need to make further arrangements for being here at the hospital longer than anticipated through this week. The next few weeks are going to be particularly stressful for me at work as it is without additional complications with unplanned hospital stays.
On a positive note, our friends the Kellers were discharged today as Joey was much improved from the horrible past few days he spent here in quarantine with a CDiff infection. We saw very little of them, but are really happy they got through this. It was a very close call with something completely out of the blue - a complication of all the recent antibiotics. They still are in need of a touch from God for the cancer though so please keep them in your prayers as well.
As always, we look to the Lord for guidance, strength, endurance, wisdom, and peace through all things and trust that He is in complete control and will most certainly turn all things toward good and for His glory.
- Tim -
If it rises above 101.3, they will automatically culture his blood and start antibiotics - which means we'll be here for a minimum of another 48hrs even if the fever goes away (to be sure nothing shows up on the blood cultures).
We may have gotten over-confident since his blood counts were so high on Friday (well into the "normal range" and they said this particular chemo drug shouldn't negatively affect them). So we've been more liberal with visitors this visit. But of course there's no way to know what, or even IF he's gotten anything at this point. There are few better places to pick up an infection than a hospital anyway,
Please pray with us that any infection (or possible drug reaction) would quickly die without the need for more antibiotics or any longer than needed stay in the hospital. Please pray for Andrea and I as well if we need to make further arrangements for being here at the hospital longer than anticipated through this week. The next few weeks are going to be particularly stressful for me at work as it is without additional complications with unplanned hospital stays.
On a positive note, our friends the Kellers were discharged today as Joey was much improved from the horrible past few days he spent here in quarantine with a CDiff infection. We saw very little of them, but are really happy they got through this. It was a very close call with something completely out of the blue - a complication of all the recent antibiotics. They still are in need of a touch from God for the cancer though so please keep them in your prayers as well.
As always, we look to the Lord for guidance, strength, endurance, wisdom, and peace through all things and trust that He is in complete control and will most certainly turn all things toward good and for His glory.
- Tim -
Friday, April 27, 2012
Starting Phase Three
Mirrored from: http://www.caringbridge.org/visit/danieljmiller/journal
After more than 2 weeks of delays, Daniel's blood counts were high enough today to start the next round of chemo treatments; in fact, they were the highest they've been for some time. That was certainly good news. It needed to be above 750 (which it hasn't been for a couple weeks), and today it was 2700, the highest it's been in a month and a half. So we were really happy to begin this new phase on such a positive note.
The day began with a spinal tap and a dose of Methotrexate into his spinal fluid as we've done so many times before. It went off reasonably well though the anesthesiologist had difficulty getting him fully out and there were a couple of painful false-starts before he was completely out. Dad dislikes this VERY much and has pretty short patience when hospital staff treats his son like anything other than royalty or gets in a hurry. But such is life. After it was all over, Daniel didn't remember a thing and I didn't tell him.
As soon as he was "recovered" they brought us back up to the 5th flood (Hematology / Oncology, or "HemOnc" for short) - our home away from home these past 4 months. I left to go back home and get some chores done while Andrea stayed. About 6 they began what we came for - what they refer to as "High Dose Methotrexate". He's received this drug a number of times in the past, but only into the spinal fluid and in much lower doses. Like several other chemo drugs, it prevents the DNA synthesis of fast-growing cells such as those found in hair follicles, the lining of the gastrointestinal system and urinary tract, and of course, the cancer cells themselves. Normally, the drug is administered into the body and then the kidneys filter it out. Unfortunately, in kids, the rate at which the kidneys filter out the drug can vary considerably or even decide not to work at all. Because of this, they need to watch him very carefully after the drug is administered and take regular measurements of how much of the drug is left in his bloodstream. This is how they determine how fast his kidneys are filtering out the drug. If things are going too slow, they do have another drug they can give him which causes the kidneys to quickly rid it from the body, but this is only used as a last resort.
Being a powerful and toxic chemical though, there are always dangerous potential side effects. The usual are things like headaches and nausea (which Daniel has had a fair amount of today). But there are worse possibilities - some MUCH worse.
Of course we hope for the best, in which case the drug should be completely gone from his system in a matter of 3-4 days and we'll be released. But as always, we request constant prayer cover that everything will go smoothly and with a minimum of side-effects.
We also that Daniel (and whoever is here with him) will be able to rest comfortably. Unlike our first visit which spoiled us in a private room, our last two admissions have been in double-rooms with roomates (or their parents) who snore rather loudly. In fact, I'm listening to that very thing as I type this. Luckily, I brought ear plugs this time, but I don't like wearing them because I won't hear Daniel during the night.
We also request and urge each of you to pray fervently and regularly for our friends the Kellers and their son Joey who are here in the HemOnc ward with us. Joey is facing an enormous battle with brain & spinal cancer and has recently suffered a number of setbacks. He is here in a quarantine room as they believe he may have an infection on top of the cancer relapse. He is in desperate need of a touch from our Father's hand and we pray for exactly that.
Visit Joey and the Kellers here: http://www.caringbridge.org/visit/joeykeller
Grace and peace to you all,
- Tim -
After more than 2 weeks of delays, Daniel's blood counts were high enough today to start the next round of chemo treatments; in fact, they were the highest they've been for some time. That was certainly good news. It needed to be above 750 (which it hasn't been for a couple weeks), and today it was 2700, the highest it's been in a month and a half. So we were really happy to begin this new phase on such a positive note.
The day began with a spinal tap and a dose of Methotrexate into his spinal fluid as we've done so many times before. It went off reasonably well though the anesthesiologist had difficulty getting him fully out and there were a couple of painful false-starts before he was completely out. Dad dislikes this VERY much and has pretty short patience when hospital staff treats his son like anything other than royalty or gets in a hurry. But such is life. After it was all over, Daniel didn't remember a thing and I didn't tell him.
As soon as he was "recovered" they brought us back up to the 5th flood (Hematology / Oncology, or "HemOnc" for short) - our home away from home these past 4 months. I left to go back home and get some chores done while Andrea stayed. About 6 they began what we came for - what they refer to as "High Dose Methotrexate". He's received this drug a number of times in the past, but only into the spinal fluid and in much lower doses. Like several other chemo drugs, it prevents the DNA synthesis of fast-growing cells such as those found in hair follicles, the lining of the gastrointestinal system and urinary tract, and of course, the cancer cells themselves. Normally, the drug is administered into the body and then the kidneys filter it out. Unfortunately, in kids, the rate at which the kidneys filter out the drug can vary considerably or even decide not to work at all. Because of this, they need to watch him very carefully after the drug is administered and take regular measurements of how much of the drug is left in his bloodstream. This is how they determine how fast his kidneys are filtering out the drug. If things are going too slow, they do have another drug they can give him which causes the kidneys to quickly rid it from the body, but this is only used as a last resort.
Being a powerful and toxic chemical though, there are always dangerous potential side effects. The usual are things like headaches and nausea (which Daniel has had a fair amount of today). But there are worse possibilities - some MUCH worse.
Of course we hope for the best, in which case the drug should be completely gone from his system in a matter of 3-4 days and we'll be released. But as always, we request constant prayer cover that everything will go smoothly and with a minimum of side-effects.
We also that Daniel (and whoever is here with him) will be able to rest comfortably. Unlike our first visit which spoiled us in a private room, our last two admissions have been in double-rooms with roomates (or their parents) who snore rather loudly. In fact, I'm listening to that very thing as I type this. Luckily, I brought ear plugs this time, but I don't like wearing them because I won't hear Daniel during the night.
We also request and urge each of you to pray fervently and regularly for our friends the Kellers and their son Joey who are here in the HemOnc ward with us. Joey is facing an enormous battle with brain & spinal cancer and has recently suffered a number of setbacks. He is here in a quarantine room as they believe he may have an infection on top of the cancer relapse. He is in desperate need of a touch from our Father's hand and we pray for exactly that.
Visit Joey and the Kellers here: http://www.caringbridge.org/visit/joeykeller
Grace and peace to you all,
- Tim -
Friday, April 20, 2012
Another Week of Waiting
Another Week of Waiting
(Mirrored from http://www.caringbridge.org/visit/danieljmiller)
After all the planning, preparations, arrangements, packing, and "psyching up" - we arrived at Riley this morning prepared to start chemo phase 3 and our planned admission to the hospital, but at the very last moment, the blood test results came back telling us that Daniel's white cell count was too low. It has to be a minimum of 750 to begin (1400 is the bottom of the normal range), but he was still only 620 today. So everything was called off, and the fighters were sent back to their corners for another week of waiting.
While we do appreciate and will enjoy an extra of "vacation" from the chemo regimen, keep in mind that this was already delayed a week and a half when they found bacteria growing in one of his blood cultures earlier this month resulting in a 3 day admission and a week of high-powered antibiotics. With this new delay, our first admission will be on the date that we should have been 1/4th of the way through.
So true-to-form, chemotherapy proves to be a one-day-at-a-time (or at least a week-at-a-time) proposition. Any plans are only made in pencil and better to just not be made at all. The hardest thing for me is trying to keep a reasonable schedule at work. But so far, things have worked out OK. It's been a struggle to keep up, we're managing and my boss and coworkers have been extremely gracious.
The most bothersome thing about today though, to me anyway, is actually that his counts are still so low. I'd expected them to be pretty good after the last week off. Need to talk to the doctors about that, but I expect the answers won't be very satisfying.
Perhaps the best part of our day though was getting to visit for awhile with the Kellers who have been there most of the week having started Joey's new round of chemo. Joey and Daniel had a blast playing their Nintendo DS games together (Daniel received his as a gift from Riley when he was first diagnosed) while Elizabeth and Andrea, and Nick and I got to catch up. It was probably the longest Nick and I had every gotten to talk together and I really enjoyed it. Please continue to keep them in your prayers as well.
Since I'd already gotten my work-week completed, we took the rest of the day to go visit the Indiana Historical Society downtown, not far from Riley. We'd never been there, and I'd purchased some tickets last year that were going to expire at the end of this month. Daniel was actually in tears at the thought of mean-old-dad forcing him to spend his day at a "history museum", but when he still didn't want to leave the very first exhibit after spending 45 minutes there, it proved to be a fun day for all. By closing time (5:00), I REALLY didn't want to try to fight the traffic coming out of downtown Indy to get home, so we opted for a brief trip to Circle Center Mall, and some dinner. We arrived back home a bit after 9p and Daniel is in great spirits. However, he tires very easily nowadays and often pays for even as little exertion as walking around the museum like this with a couple days of sore muscles and low energy. That's just how out-of-shape he is after having spent the past 2 years with very little activity, and the last few months almost completely sedentary or even bedridden. I struggle with trying to find the balance of pushing him just a little to get some exercise in, and not wanting to compromise an already very weak immune system with rebuilding sore muscles. As it happens, I haven't had to push him at all lately as he's been feeling more energetic. If anything, I spend my time reigning him in and slowing his pace to keep him from paying too heavy a price. In all it's going well ... except for the continuing low blood counts anyway.
But as always - we trust that God is in control, all things happen for a reason, and ultimately, He will work all things into a pattern for good and to His glory (Rom 8:28). Peace comes when we are content to trust Him with all things.
More news as it comes - same bat-channel. Thanks again to all who have continued to keep us in your thoughts & prayers.
Prayer Requests:
1) As always - complete healing from the cancer
2) Strong blood count numbers (specifically red & white cells)
3) That he remains free from infections and generally healthy during these times of lowered immunity
4) When the next round of chemo does start, that his body will eliminate the drug quickly and completely (more on this later)
5) Minimal side-effects, no reactions, etc. to the drugs
6) That Andrea and I will continue to be able to keep schedules working, our own health, finances, etc. so that NOTHING gets in the way of proceeding on course
7) That God would be glorified, lives will be strengthened (especially Daniel's, but others through his witness as well), and the knowledge of our Great Physician, His love, and His plan of hope would be made known a little wider and a little clearer through all of this.
And last - but foremost - please PLEASE keep Joey Keller and his parents in your prayers (http://www.caringbridge.org/visit/joeykeller)
- Tim -
Thursday, April 19, 2012
The Start of Phase 3
The Start of Phase 3
(Mirrored on CaringBridge at http://www.caringbridge.org/visit/danieljmiller/journal)Though the circumstances of last week's hospital visits were far from desirable, it has at least afforded us an extra week's break before the start of our third phase of chemo. It's been great for Daniel and he's show a lot more energy and better attitude than we've seen in a long time. It's been an enormous blessing to all 3 of us.
This third phase, called "Interim Maintenance 1" consists of 4 hospital stays (3-4 days each) over the next two months where Daniel will get extra high doses of the drugs Vincristine and Methotrexate. You may have heard of that 2nd one in the news recently as it's been one of the chemo drugs that are currently in very short supply from generic pharma companies that can't make any money from it. So far, Riley tells us they haven't had significant trouble in getting what they need. (hint: 1st Prayer Request).
Because of the extra high doses of this already nasty drug, they need to have Daniel under close watch for a few days after giving it to him. (2nd Prayer Request). Because Daniel is still terrified of having to stay in the hospital alone for any length of time, we'll have to be there with him the whole stay. Andrea and I are getting pretty good at tag-teaming it, and we've been VERY grateful for some help from other friends in this regard along the way also. THANKFULLY, the hospital was willing to reschedule these stays to be over weekends for us so I don't have to miss any more work (or try to continue working after staying at the hospital all night-NOT fun!)
This first stay, beginning tomorrow (Fri) morning, will also include a spinal tap & injection of MORE Methotrexate into his spinal fluid. I truly hate everything about the idea of what we're doing to him ... except for the part about killing the cancer. I'm reminded of the scene in "The Ten Commandments" where Ramses is accusing Moses to the pharaoh and adding little weights onto a balance scale for each accusation until it tips his way. But then Moses adds a single BRICK onto the other side outweighing all the other points. Well the ONE benefit of chemotherapy is kinda like that to me. It's ugly, dirty, nasty, and horrible to look at - but if it does the job, it FAR outweighs everything else.
Ultimately though, our trust is NOT in chemotherapy, or even in miracles. Our trust is in the One who holds the future - regardless of what it brings. And though we shudder, and cry, and lay awake long hours trying to turn off the awful thoughts and images of what might be in our weaker moments, we know in our hearts that there is only one Source of Hope. For if God is not in control, or He is not good, or He does not have our best in mind ... well then there's no such thing as hope ... only luck, if even that. But we know these things are true for we know the One who IS the Truth. And we've put all the chips on His "square" as it were. It's all or nothing on God.
And so - as best our faith allows us, we say with Job, "yea though He slay me, yet will I trust in him" (Job 13:15) or with Daniel's three friends Hananiah, Azariah, and Mishael, "...If it be so, our God whom we serve is able to deliver us from the burning fiery furnace, and he will deliver us out of thine hand, O king. But if not, be it known unto thee, O king, that we will not serve thy gods, nor worship the golden image which thou hast set up." (Dan 3:17-18)
Thanks for all your prayers and support. We cherish and need every one.
- Tim -
P.S. Please also remember to keep Joey Keller and his parents in your prayers too. Join their CaringBridge site here:
http://www.caringbridge.org/visit/joeykeller
Tuesday, April 17, 2012
Please Pray for Joey Keller
Please Pray for Joey Keller
It's been awhile since updating Daniel's status. In a nutshell, he's doing well, and we'll be starting our first PLANNED hospital admission to kick off the 3rd phase (another intensive phase) of his chemo this coming Friday. I'll try to give more info later.But this post is really to solicit your prayers for our friends the Kellers. Joey is a friend of Daniel's and also a cancer patient at Riley. We run into them often at the clinic. Joey is battling a very aggressive form of brain & spinal cancer and has recently relapsed. He is in desperate need of a miracle. Luckily, we have a God Who specialized in that very thing. If you pray for Daniel (or even if you don't) please add Joey and his parents Nick and Elizabeth to your prayers also.
You can read - and join Joey's CaringBridge site here:
http://www.caringbridge.org/visit/joeykeller/journal
Nick's last post tells the story of what's been going on recently.
- Tim -
Sunday, April 8, 2012
Easter
(Mirroring most recent entry here: http://www.caringbridge.org/visit/danieljmiller/journal)
Easter:
Andrea covered much of this in her update to my last post, so I'll not rehash the same events except to fill-in a few extras.
It was a really long night for all three of us. We got here around 1:30a and weren't moved to a room until after 5:30a. So it was a REALLY long night for Andrea and I trying to catch a few winks between interruptions in a couple of really small, hard chairs. There wasn't even the usual bench/ couch in this particular ER room, and we had to bring in the 2nd chair at that. I didn't get much sleep until after about 8 or so. Although interrupted quite a few times, we both "slept" until about noon. Daniel & I both tried resting a couple other times during the day, but it was pretty much a wasted effort.
Any time we come in for a fever, they automatically do 4 different blood cultures. They take two samples each from two different places (his port and his arm) and place samples in petri dishes in an automated machine that "watches" for anything to start growing. In the past nothing has ever shown up. But the hospital started calling us about midnight last night when the machine found something growing. Unfortunately, my phone was upstairs on the charger & it wasn't until they tried Andrea's phone about 1a that we got the message.
We still haven't heard exactly what bacteria has been identified, but if only one of the 4 remains positive (nothing grows in the other 3 cultures), then there's a fairly high probability that it's just the result of some contamination in one of the samples. But without knowing for sure, we have to take it seriously and hit him with a boatload of antibiotics - something I hate doing under NORMAL circumstances! But I see very few choices here. I strongly suspect that we won't see any additional cultures go positive (I think it was a contamination issue), but the extreme danger of actually having an infection with his almost nonexistent immune system means we have to take every possible precaution and hit it hard and aggressively - even if it's a false alarm.
After the incident with the other kid earlier today (all accidental of course, but nonetheless frustrating), the combination of some Tylenol and some food seems to have made things much better. Much of the swelling has gone down and the second time they attempted to re-access the port, they called in the Nurse Supervisor who'd had a lot of experience. It showed. Things went quickly, easily, and with MUCH less pain than the previous time. Our nurse was great, and he felt really bad about the whole ordeal, but we were also really glad he asked for help in this situation.
One of the antibiotics they give him is called Vancomycin. Unfortunately, many people have a low to moderately severe reaction to it known as "Red-Man Syndrome". This happened to Daniel the first time he received it a few weeks ago. He's gotten it once or twice since then with no problems since they adjust to giving it to him much more slowly and give him Benadryl first. Tonight though, even after the Benadryl and with the slower rate, he started to feel some of the initial symptoms of a reaction and became worried about it. I stopped the IV myself and went to talk to the nurse. We decided to wait a bit, get some food in him, and then try again even more slowly. The combination (together with watching "Transformers" on TV :) did the trick and we had no further issues. But it's all combined to just make a really long day. If it weren't for the basket of toys they gave him, you'd have never known it was Easter around here. But we'll be sure we get time to celebrate as a family - whether it's here in a hospital room, or back home.
As Andrea said, his next phase of chemotherapy is due to start this coming Friday. But it will require that his white cell counts are over a certain level that he's not even close to right now. Mixed emotions over that to say the least!
Nevertheless, I find myself at the end of this day with a grateful heart. Having watched "The Passion of the Christ" on Friday evening as a family, we have all been struck this weekend with the unfathomable suffering and selflessness that our Lord Jesus Christ underwent on our behalf. Our own trials and tribulations are insignificant and, in Paul's words, but a "breath" compared to His eternal sacrifice for us. It makes me feel ashamed to complain or, even for a moment, feel sorry for ourselves compared to what Jesus Christ did on our behalf.
Many Christians don't realize that Jesus' sacrifice was not limited to those few hours leading up to Golgotha a couple thousand years ago. Rather, it was Jesus willingness to condescend from His position with the Father in order to become a Man ... one of us ... not just for thirty some years, but FOREVER. Perhaps the most staggering thing about what God did on our behalf all those years ago, was not that God would die on our behalf (though that is incomprehensible enough), but that there is now a MAN seated at the right hand of the Father on the throne of God. What Jesus Christ gave up in order to become one of us (note that He never ceased to be God, only laid aside some of his glorious attributes that He might also become fully human - Phil 2:6-9).
Paul considered it a great privilege and a necessary part of the process by which the Holy Spirit perfects His work in us, that we must participate "in the fellowship of His suffering" (Phil 3:10). And so if, in some small measure, these trials which God has allowed into our lives, might teach us something about our Lord ... much less make us in any way more like Him ... then we can truly rejoice in these things with much thanksgiving that God is at work in us and through us to make A.L.L. "things work together into a pattern for Good." (Rom 8:28)
Each day God finds a new way to ask each of us, "Do you trust Me?". And though we certainly find ourselves wavering far more often than we'd like, it becomes a bit easier each time to trust Him with A.L.L. things. ("Control" is such an illusion anyway, isn't it? :)
Though we celebrate Easter as one of the central-most holy days of the Christian Calendar, it is important to recognize that the entirety of the means of our salvation was accomplished 3 days and nights earlier on a wooden cross on the top of a hill named Golgotha. The Resurrection 3 days later proved that He was Whom He said He was and accomplished what He said He would accomplish. Easter is rightly a time of enormous celebration, but all of Time and Eternity revolves around the Cross and Jesus' proclamation ... "Tetelestai": "It is finished".
We hope everyone has had a joyful and fruitful time of celebrating Jesus' resurrection and drawing closer to Him through these past few days. Our gratitude and love go out to all of you who have kept us with our saga during these trying times, but mostly to our Faithful, Loving, Gracious, and Wonderful Counselor - the King of the Universe, Master Physician, and Personal Friend - "Jesus Christ: God's Son; Savior".
Grace and Peace to all;
Daniel, Andrea, and Tim
Easter:
Andrea covered much of this in her update to my last post, so I'll not rehash the same events except to fill-in a few extras.
It was a really long night for all three of us. We got here around 1:30a and weren't moved to a room until after 5:30a. So it was a REALLY long night for Andrea and I trying to catch a few winks between interruptions in a couple of really small, hard chairs. There wasn't even the usual bench/ couch in this particular ER room, and we had to bring in the 2nd chair at that. I didn't get much sleep until after about 8 or so. Although interrupted quite a few times, we both "slept" until about noon. Daniel & I both tried resting a couple other times during the day, but it was pretty much a wasted effort.
Any time we come in for a fever, they automatically do 4 different blood cultures. They take two samples each from two different places (his port and his arm) and place samples in petri dishes in an automated machine that "watches" for anything to start growing. In the past nothing has ever shown up. But the hospital started calling us about midnight last night when the machine found something growing. Unfortunately, my phone was upstairs on the charger & it wasn't until they tried Andrea's phone about 1a that we got the message.
We still haven't heard exactly what bacteria has been identified, but if only one of the 4 remains positive (nothing grows in the other 3 cultures), then there's a fairly high probability that it's just the result of some contamination in one of the samples. But without knowing for sure, we have to take it seriously and hit him with a boatload of antibiotics - something I hate doing under NORMAL circumstances! But I see very few choices here. I strongly suspect that we won't see any additional cultures go positive (I think it was a contamination issue), but the extreme danger of actually having an infection with his almost nonexistent immune system means we have to take every possible precaution and hit it hard and aggressively - even if it's a false alarm.
After the incident with the other kid earlier today (all accidental of course, but nonetheless frustrating), the combination of some Tylenol and some food seems to have made things much better. Much of the swelling has gone down and the second time they attempted to re-access the port, they called in the Nurse Supervisor who'd had a lot of experience. It showed. Things went quickly, easily, and with MUCH less pain than the previous time. Our nurse was great, and he felt really bad about the whole ordeal, but we were also really glad he asked for help in this situation.
One of the antibiotics they give him is called Vancomycin. Unfortunately, many people have a low to moderately severe reaction to it known as "Red-Man Syndrome". This happened to Daniel the first time he received it a few weeks ago. He's gotten it once or twice since then with no problems since they adjust to giving it to him much more slowly and give him Benadryl first. Tonight though, even after the Benadryl and with the slower rate, he started to feel some of the initial symptoms of a reaction and became worried about it. I stopped the IV myself and went to talk to the nurse. We decided to wait a bit, get some food in him, and then try again even more slowly. The combination (together with watching "Transformers" on TV :) did the trick and we had no further issues. But it's all combined to just make a really long day. If it weren't for the basket of toys they gave him, you'd have never known it was Easter around here. But we'll be sure we get time to celebrate as a family - whether it's here in a hospital room, or back home.
As Andrea said, his next phase of chemotherapy is due to start this coming Friday. But it will require that his white cell counts are over a certain level that he's not even close to right now. Mixed emotions over that to say the least!
Nevertheless, I find myself at the end of this day with a grateful heart. Having watched "The Passion of the Christ" on Friday evening as a family, we have all been struck this weekend with the unfathomable suffering and selflessness that our Lord Jesus Christ underwent on our behalf. Our own trials and tribulations are insignificant and, in Paul's words, but a "breath" compared to His eternal sacrifice for us. It makes me feel ashamed to complain or, even for a moment, feel sorry for ourselves compared to what Jesus Christ did on our behalf.
Many Christians don't realize that Jesus' sacrifice was not limited to those few hours leading up to Golgotha a couple thousand years ago. Rather, it was Jesus willingness to condescend from His position with the Father in order to become a Man ... one of us ... not just for thirty some years, but FOREVER. Perhaps the most staggering thing about what God did on our behalf all those years ago, was not that God would die on our behalf (though that is incomprehensible enough), but that there is now a MAN seated at the right hand of the Father on the throne of God. What Jesus Christ gave up in order to become one of us (note that He never ceased to be God, only laid aside some of his glorious attributes that He might also become fully human - Phil 2:6-9).
Paul considered it a great privilege and a necessary part of the process by which the Holy Spirit perfects His work in us, that we must participate "in the fellowship of His suffering" (Phil 3:10). And so if, in some small measure, these trials which God has allowed into our lives, might teach us something about our Lord ... much less make us in any way more like Him ... then we can truly rejoice in these things with much thanksgiving that God is at work in us and through us to make A.L.L. "things work together into a pattern for Good." (Rom 8:28)
Each day God finds a new way to ask each of us, "Do you trust Me?". And though we certainly find ourselves wavering far more often than we'd like, it becomes a bit easier each time to trust Him with A.L.L. things. ("Control" is such an illusion anyway, isn't it? :)
Though we celebrate Easter as one of the central-most holy days of the Christian Calendar, it is important to recognize that the entirety of the means of our salvation was accomplished 3 days and nights earlier on a wooden cross on the top of a hill named Golgotha. The Resurrection 3 days later proved that He was Whom He said He was and accomplished what He said He would accomplish. Easter is rightly a time of enormous celebration, but all of Time and Eternity revolves around the Cross and Jesus' proclamation ... "Tetelestai": "It is finished".
We hope everyone has had a joyful and fruitful time of celebrating Jesus' resurrection and drawing closer to Him through these past few days. Our gratitude and love go out to all of you who have kept us with our saga during these trying times, but mostly to our Faithful, Loving, Gracious, and Wonderful Counselor - the King of the Universe, Master Physician, and Personal Friend - "Jesus Christ: God's Son; Savior".
Grace and Peace to all;
Daniel, Andrea, and Tim
Andrea's Message
This is Andrea. I'll try to add a few more details, and Tim can write a much more eloquently worded synopsis when he has time.
We got to the ER around 1:30 am Easter morning. Tim and I were up all night. They took more cultures and gave him two different antibiotics. His counts came back about the lowest he's ever had I think - 150. Daniel was able to rest some between pokes and prods. He was taken to his room at 6:30 am - 5134-2 (which was an ordeal as well. Room he was to go to had some kind of leak all over the floor, so had to put him in another one with a roommate that was missing a bed, so had to get a bed, sleeping chair for us, and table cart thing.) After he got settled in, I left and came home to sleep while Tim slept in the room.
According to Tim, he was given a small Easter Basket with a few stuffed animals and toys in it. While he was in the play room apparently another kid tripped over his IV line, causing the medicine he was getting to all go under the skin, making him sore. He had to have the port re-accessed, and the nurse didn't get it in right first try and had to re-stick him again. Tim said he thought he was having another reaction (has had them before so give this type antibiotic real slow to him) to one of the antibiotics so the nurses were discussing with the Dr. what to do.
Why are we here in the first place? One of the 4 blood cultures taken Friday when he was in the hospital due to a fever came back positive for bacteria growth. It was one taken from the port site (take two from both port site and his arm.) They said it could be a contaminated sample, but will have to wait and see if the others grow any bacteria as well. He has to have three consecutive days of negative culture results with no fever before he can go home.
This couldn't have been worse timing for him, with it being Easter weekend, and the fact he has a scheduled 4 day hospital stay this coming Friday. It is possible he'll end up being there all week, but we don't know for sure. Still have to find out if his chemo for this coming Friday is count dependent or not (meaning if it's too low they wait till it comes up.)
We know God is in control through all this. We know He is watching over Daniel. It's just been a very hard time emotionally for all of us, but especially Daniel. We had had such a great evening together Sat. Watched the movie "The 10 Commandments". Daniel was in a great mood and being silly all evening. He had just got in bed at midnight (I know - but hey, it's a 3 1/2 hr move :-P) when I got the call from the Dr. about his counts and having to bring him in. He became hysterical and couldn't quite crying. I wanted to scream NO and ball myself, but couldn't. I didn't understand why a few hours should matter that much and not be able to at least wait till morning to bring him in. But as Tim wisely said, you just don't mess around with this type of thing. So off we went.
Lord, what are the lessons for us to be learning through this? Help us always keep our eyes on You! Thank you all for the continued prayers. Sorry if this is rambling, but I'm really tired and am getting brain fog! Will keep you posted on how things progress.
We got to the ER around 1:30 am Easter morning. Tim and I were up all night. They took more cultures and gave him two different antibiotics. His counts came back about the lowest he's ever had I think - 150. Daniel was able to rest some between pokes and prods. He was taken to his room at 6:30 am - 5134-2 (which was an ordeal as well. Room he was to go to had some kind of leak all over the floor, so had to put him in another one with a roommate that was missing a bed, so had to get a bed, sleeping chair for us, and table cart thing.) After he got settled in, I left and came home to sleep while Tim slept in the room.
According to Tim, he was given a small Easter Basket with a few stuffed animals and toys in it. While he was in the play room apparently another kid tripped over his IV line, causing the medicine he was getting to all go under the skin, making him sore. He had to have the port re-accessed, and the nurse didn't get it in right first try and had to re-stick him again. Tim said he thought he was having another reaction (has had them before so give this type antibiotic real slow to him) to one of the antibiotics so the nurses were discussing with the Dr. what to do.
Why are we here in the first place? One of the 4 blood cultures taken Friday when he was in the hospital due to a fever came back positive for bacteria growth. It was one taken from the port site (take two from both port site and his arm.) They said it could be a contaminated sample, but will have to wait and see if the others grow any bacteria as well. He has to have three consecutive days of negative culture results with no fever before he can go home.
This couldn't have been worse timing for him, with it being Easter weekend, and the fact he has a scheduled 4 day hospital stay this coming Friday. It is possible he'll end up being there all week, but we don't know for sure. Still have to find out if his chemo for this coming Friday is count dependent or not (meaning if it's too low they wait till it comes up.)
We know God is in control through all this. We know He is watching over Daniel. It's just been a very hard time emotionally for all of us, but especially Daniel. We had had such a great evening together Sat. Watched the movie "The 10 Commandments". Daniel was in a great mood and being silly all evening. He had just got in bed at midnight (I know - but hey, it's a 3 1/2 hr move :-P) when I got the call from the Dr. about his counts and having to bring him in. He became hysterical and couldn't quite crying. I wanted to scream NO and ball myself, but couldn't. I didn't understand why a few hours should matter that much and not be able to at least wait till morning to bring him in. But as Tim wisely said, you just don't mess around with this type of thing. So off we went.
Lord, what are the lessons for us to be learning through this? Help us always keep our eyes on You! Thank you all for the continued prayers. Sorry if this is rambling, but I'm really tired and am getting brain fog! Will keep you posted on how things progress.
Saturday, April 7, 2012
From a Good Friday to a Bad Easter
Just got an emergency call from Riley that they found something in
Daniel's blood cultures. So we're heading in to ER now (just before
1am). He'll be admitted and given broad spectrum antibiotics until they
can get an exact determination of what's growing in the culture. He's
practically hysterical right now over the thought of having to go back
in again. Please Pray for him.
More to follow
More to follow
A Good Friday for Daniel
(Mirroring from http://www.caringbridge.org/visit/danieljmiller/journal)
Daniel is doing much better today. His fever appears to
be gone. However, his white cell count has dipped dangerously low. It
was right on the borderline of an automatic hospital admission
yesterday, but they let him go home in the end since his fever appeared
controlled, but only with the warning that if it began to climb again,
we'd be admitted immediately. So we're grateful that the fever looks to
be gone, but it does look like quarantine for Easter. At least we're
glad to not be in the hospital.
Last night, he'd started to feel better, so I gathered everyone together to read the Easter story from Matthew and then we watched "The Passion of the Christ" together. I was apprehensive letting Daniel see this and described to him what would be happening. He was insistent that it would be OK, so we went ahead. He was fine with it and when we talked about it afterward he expressed, or course, that he hadn't realized what Jesus really went through and actually felt more at peace and "happy" for having spent the evening learning about God. (insert happy face on dad at this point. :)
As always, THANK YOU all for your prayers. Please continue to lift him up during this time of dangerously low immune system, and having to miss the Easter festivities with the rest of the family.
We are most grateful for this wonderful Easter weekend and that we will be able to spend it at home with our family and our gracious RISEN Lord and Savior Jesus Christ.
HAPPY RESURRECTION DAY to all!
Daniel, Andrea, and Tim
A Good Friday for Daniel:
Last night, he'd started to feel better, so I gathered everyone together to read the Easter story from Matthew and then we watched "The Passion of the Christ" together. I was apprehensive letting Daniel see this and described to him what would be happening. He was insistent that it would be OK, so we went ahead. He was fine with it and when we talked about it afterward he expressed, or course, that he hadn't realized what Jesus really went through and actually felt more at peace and "happy" for having spent the evening learning about God. (insert happy face on dad at this point. :)
As always, THANK YOU all for your prayers. Please continue to lift him up during this time of dangerously low immune system, and having to miss the Easter festivities with the rest of the family.
We are most grateful for this wonderful Easter weekend and that we will be able to spend it at home with our family and our gracious RISEN Lord and Savior Jesus Christ.
HAPPY RESURRECTION DAY to all!
Daniel, Andrea, and Tim
Friday, April 6, 2012
Easter at Riley?
(Mirroring my CaringBridge Entry at http://www.caringbridge.org/visit/danieljmiller/journal Please follow us one one of the two sites for automatic notifications of new posts)
Easter At Riley??
Daniel had a rough day yesterday. Andrea reported that he was in tears most of the day without even really knowing why. Wednesday (day before) he was at the clinic getting his last chemo of this "phase". It was a single drug, but his red cells were low enough that they gave him blood, which takes an additional 4 hrs & makes for a long day. It's just never easy.
He had been running a low grade fever all day, and by evening it began creeping up. We gave him Tylenol shortly before bed and it came right down, so I went to bed & hoped for the best. I got up around 4 to check him and it was back up to 102.5 or so. Previous experience prevented me from immediately rushing him to Riley ER even though that's actually what they tell us to do. I gave him another dose & set my alarm for 6:00a. At 6 it was down to about 100.2 so I chose to wait until the clinic opened in a few hours. By 9 this am, it was back up to 102.7 so it was off to the clinic. Andrea took him in while I came in to work. But Daniel was in tears - sobbing actually - at the thought of yet ANOTHER trip to the hospital. He tried everything he could think of to talk me out of it. I HATE being the one to force this stuff and am often feeling really alone in doing so anymore. It's not always good to be the dad. Andrea reports that he's been very stressed at the hospital as well all day. It's likely that some of the emotional component is due to Wed's chemo, and also the fever itself.
Now at nearly 2:00, they're just getting around to giving him the antibiotic (no idea what the staff has been doing all this time since that's the PRIMARY thing they do for him, but I'm trying not to get too wrapped up about that.) His white counts (and therefore immune system) have dropped significantly since even Wed and are now within just a few points of an automatic admission to the hospital. They'll check his fever again soon and if it's not climbing, will likely release them to come home. But if it climbs again overnight, it will definitely mean an admission. And if it's going up now, will probably mean the same thing.
I'm going to go out and look for some kind of gift to bring him and hopefully get his mind off it all. Not the way we'd hoped to spend Easter weekend, but we know God has always been and will continue to be in the midst of all that happens. Please keep us in your prayers
Specifically:
1. Peace and comfort for Daniel
2. Healing from whatever is causing the fever (an infection of some kind)
3. Strength for all 3 of us
We wish EVERYONE a wonderful and blessed Resurrection weekend remembering the unimaginable sacrifice our Lord went through on our behalf and His ultimate demonstration of victory over sin, death, disease, and all things that could come between us and our Heavenly Father.
Grace and Peace to all.
Easter At Riley??
Daniel had a rough day yesterday. Andrea reported that he was in tears most of the day without even really knowing why. Wednesday (day before) he was at the clinic getting his last chemo of this "phase". It was a single drug, but his red cells were low enough that they gave him blood, which takes an additional 4 hrs & makes for a long day. It's just never easy.
He had been running a low grade fever all day, and by evening it began creeping up. We gave him Tylenol shortly before bed and it came right down, so I went to bed & hoped for the best. I got up around 4 to check him and it was back up to 102.5 or so. Previous experience prevented me from immediately rushing him to Riley ER even though that's actually what they tell us to do. I gave him another dose & set my alarm for 6:00a. At 6 it was down to about 100.2 so I chose to wait until the clinic opened in a few hours. By 9 this am, it was back up to 102.7 so it was off to the clinic. Andrea took him in while I came in to work. But Daniel was in tears - sobbing actually - at the thought of yet ANOTHER trip to the hospital. He tried everything he could think of to talk me out of it. I HATE being the one to force this stuff and am often feeling really alone in doing so anymore. It's not always good to be the dad. Andrea reports that he's been very stressed at the hospital as well all day. It's likely that some of the emotional component is due to Wed's chemo, and also the fever itself.
Now at nearly 2:00, they're just getting around to giving him the antibiotic (no idea what the staff has been doing all this time since that's the PRIMARY thing they do for him, but I'm trying not to get too wrapped up about that.) His white counts (and therefore immune system) have dropped significantly since even Wed and are now within just a few points of an automatic admission to the hospital. They'll check his fever again soon and if it's not climbing, will likely release them to come home. But if it climbs again overnight, it will definitely mean an admission. And if it's going up now, will probably mean the same thing.
I'm going to go out and look for some kind of gift to bring him and hopefully get his mind off it all. Not the way we'd hoped to spend Easter weekend, but we know God has always been and will continue to be in the midst of all that happens. Please keep us in your prayers
Specifically:
1. Peace and comfort for Daniel
2. Healing from whatever is causing the fever (an infection of some kind)
3. Strength for all 3 of us
We wish EVERYONE a wonderful and blessed Resurrection weekend remembering the unimaginable sacrifice our Lord went through on our behalf and His ultimate demonstration of victory over sin, death, disease, and all things that could come between us and our Heavenly Father.
Grace and Peace to all.
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